Medical marijuana could ease Lehigh Valley children's suffering

That's a big deal for most teens, but even more so for Christopher. The 18-year-old has tuberous sclerosis, a genetic disorder that causes benign tumors to grow in any organ of the body. He has one small one in his kidney and 14 hardened areas in his brain's frontal lobe, part of which has been removed as a result. His condition has resulted in uncontrolled seizures and horrible behavioral problems that have been made worse by his anti-seizure drugs.

His mother, Deena, told me he was tremendously excited when his parents drove him to the prom at Colonial Academy, part of Colonial Intermediate Unit 20 for students with various special needs. Unfortunately, the dream quickly turned into a nightmare.

"Within 20 minutes," Deena said, "he had a massive seizure, and we had to take him home.

"I felt so bad for him," she said. "He looked so forward to this for a long time."

That's a really sad story that barely scratches the surface of the horrors Christopher and his parents have endured because of his condition — and that might be alleviated if the state House would approve a medical marijuana bill that easily passed the Senate. There are many other families like theirs, desperately hoping that Pennsylvania will join 23 states and the District of Columbia in permitting some degree of access to medicinal cannabis to relieve suffering.

I wrote recently about state Rep. Matt Baker, R-Tioga, and his determination to kill the bill in the House Health Committee, which he chairs. He said he won't allow it to come up for discussion or a vote because medical marijuana doesn't have Food and Drug Administration approval and some state health groups have called for more research. When I challenged the fairness of one man's having that much power, he argued that it's not unusual for committee chairmen to decide which bills are "meritorious" enough to come to a vote.

Photo courtesy of the Sharrer family

Matt Sharrer and his daughter Annie.

Matt Sharrer and his daughter Annie.

(Photo courtesy of the Sharrer family)

A spokesman for the group Law Enforcement Against Prohibition, former Illinois police officer Brian Gaughan, told me well-heeled pharmaceutical companies play a big part in the opposition to making it legal, since in some cases it would compete with their products. As it happens, large pharmaceutical PACs have been among Baker's campaign contributors, along with many other medical PACs.

I decided to focus today on two families I heard from in the wake of that column. They're members of a support, education and lobbying group called Campaign for Compassion, formed by Pennsylvania parents who found each other around the time some amazing medical cannabis success stories were emerging from Colorado.

"I don't know how I'd live without these women anymore," Deena told me.

Matt Sharrer of New Oxford, Adams County, said, "There's a core group of probably 20 to 25 people, either a mom or a dad. But we've heard from over 100 to 200 different people from all over the state who want to get involved."

Matt and Angela Sharrer's daughter, Annie, started having infantile spasms, a devastating form of childhood epilepsy, when she was 6 months old. The constant seizure activity during her infancy has left her with physical and intellectual challenges, Sharrer said.

Now 10, Annie has five to 20 less-severe seizures a day and one or two more violent ones a week. Sharrer said she needs three to four hours to recover from each of the latter.

As with Christopher, Annie has suffered from the terrible side effects of the FDA-approved medications prescribed to slow her seizures, most of which didn't work anyway. One was effective for several months, but she ended up with a severe case of pancreatitis, had to discontinue the medication and her seizures returned. Her parents said there are no more good pharmaceutical options.

Their best hope is for what is known as CBD oil, which is a component of cannabis that has yielded some amazing results in Colorado and elsewhere in reducing and even eliminating seizures, sometimes in combination with other cannabis derivatives. Sharrer had bitter words for Baker and for House Speaker Mike Turzai, R-Allegheny, who assigned the bill to Baker's committee.

"Every day Baker and Turzai do nothing on this is a day added to Annie's countdown to another seizure and more damage to the brain," he said.

While the Sharrers wait, they do what they can to make their child comfortable.

"I was up twice last night with my daughter as she had seizures," Matt Sharrer said. "My arms were around her, her body was jolting like an electric shock was going through her and I was there thinking: 'What is wrong with this picture?' "

He sent me a video of one of the bad ones, and it's graphic. As her jolting slows down, you can see that her lips have turned blue and she's briefly stopping breathing.

"She usually ends up biting her cheek or tongue until blood runs out her mouth," Sharrer explained. "This will last anywhere from two to five minutes."

When their 3-year-old son sees his sister fall to the floor and begin a seizure, he'll start crying, wondering what's happening to her. Calming him and trying to explain is another challenge.

"Sometimes it's a three-ring circus around here," Sharrer admitted.

So why not move west, as some parents have done?

"This is something we believe we should have in our state," he said. "We're going to stay here and fight for it."

Leaving the state isn't an option with the Kenneys. Deena said Christopher can't travel by plane or be in a car for more than a couple of hours. He doesn't even like leaving the house because he's afraid he'll have another seizure.

She said the episode at the prom was a particularly bad version of the ones he has five to seven times a week. She said he turns blue, begins drooling and the left side of his body becomes paralyzed. This lasts two to three minutes.

"Those are frightening," she said.

At the prom, Deena and her husband, Joe, each had to take one side of him to get him out of the building.

Maybe the most horrifying part of their family's story is the effect one of Christopher's anti-seizure medications had on him, sending him off on homicidal rages directed at his mother. Here's how she described it in her email to me:

"To say that period of our lives was a hellish nightmare is a gross understatement. I had to wear a helmet in my home to protect myself, enter my home through a basement window … and listen to my son scream 'hit mommy' for hours on end in the middle of the night while knocking on every door in my home 'hunting' for me so he could hurt me. When he did get to me, he would beat me and then cry afterward. It was a part of [our] life that will leave us scarred forever."

When they finally realized the cause and weaned him from the medication, the rages almost completely stopped, but they've never found an effective, safe medication for either his seizures or his behaviors.

So when she saw a CNN documentary, "Weed," which reported on a young girl in Colorado whose 300 weekly seizures were eliminated by small doses of concentrated cannabis oil, Deena began researching and found that cannabis has been prescribed for various ailments, including epilepsy, going back to the mid-1800s. She joined Campaign for Compassion and began working actively to make medicinal cannabis legal in Pennsylvania.

Deena told her family's story recently at a round table forum convened by Gov. Tom Wolf and led by Senate Bill 3 sponsors Mike Folmer, R-Lebanon, and Daylin Leach, D-Montgomery.

"As you can see in our efforts to help our son," she told the group, "we have left no stone unturned. The only stone left is the one we are not allowed to turn over."

She concluded, "When you talk about the dangers of cannabis, I shake my head because I know what danger really is. Risk does not disappear with an FDA-approved label attached to it."

Dr. William Trescher, pediatric neurologist at Penn State Milton S. Hershey Medical Center, and Dr. Bruce Nicholson, director of Pain Specialists of Greater Lehigh Valley, also spoke at the forum, supporting the legislation because they think it will open the door for gathering more data on something that looks very promising.

Trescher concluded, "I think we need to have an effort that allows us to move forward to explore how these medications work. That's what we're asking for."

I could go through the list of Campaign for Compassion parents and hear many more such stories. I read an anonymous post at the group's website in which a family confessed that it was breaking the law to get cannabis oil to its son — and that his seizures finally were being controlled.

Still, there is no guarantee cannabis treatments will work for everyone. Deena Kenney said of five families she knows who moved to Colorado, medical cannabis was ineffective for one, somewhat effective for another and extremely successful for three.

But can you understand why a mother or father would want the opportunity to try, particularly when they're hearing and reading about amazing results elsewhere, without the dangerous side effects of some of the pharmaceuticals?

What is medical marijuana? Using the marijuana plant, or cannabis, as medicine, usually by smoking or eating it. The federal Food and Drug Administration has not approved the plant as medicine but has approved two medications in pill form that contain ingredients found in marijuana. The two main compounds of medical interest are THC, marijuana's main mind-altering chemical, and CBD, which does not have the mind-altering property.

What are the benefits of THC? It increases appetite and reduces nausea. THC-based medications can be used to decrease pain and inflammation and alleviate muscle control problems.

What are the benefits of CBD? It can treat some of the same symptoms as THC as well as controlling epileptic seizures, and is being considered for treating mental illness and addictions.

Where is medical marijuana legal? It is available by prescription in 23 states, including New Jersey and New York, and the District of Columbia.

Which state was first? California, by popular vote, in 1996.

Sources: The National Institutes of Health and National Conference of State Legislatures.